Beautiful Truth

A few weeks ago, I had the opportunity to share with a group of caregivers and survivors at a rehab. From the moment they entered the gym, I sensed their exceptional spirits. This was not surprising, as I have discovered the brain injury community to be comprised of the finest people you will ever encounter.

Tenderness, resilience, determination, grace, and grit are what I feel in our interactions. I see it on their faces when I share, and I am always inspired. It takes courage to show up and open your heart to another. Sharing and listening is an even exchange of vulnerabilities.

In the weeks before speaking, I had been struggling. I found myself in a space of heightened frustration and anxiety. I’ve had some added pressures lately, and juggling them has been challenging. I recently spent some time with someone close to me and found myself wanting something from her. It was simple, but it didn’t come. I didn’t fully realize what I needed until I was preparing to speak to the support group.

Caregiving is hard. It means various things to different people, and even within the brain injury community, it can vary significantly. For example, our son cannot drive, he cannot be left unattended, and he requires constant supervision. These things have to do with his safety and impulsivity control. He can, however, make his own breakfast (three eggs a day), dress himself, and perform many activities of daily living. Many of these tasks require guidance, such as reminders to turn off the stove, to make sure he is using soap when bathing, or to take medication. Sometimes the heat of the shower triggers a seizure, so he must be monitored. Ordinary responsibilities can become precarious, which means being ever aware. We practice endless de-escalating and help Taylor understand the world around him and how it relates to his injury. The list is exhaustive, so I’ll stop here.

Another mother close to me has a far different scenario. Her son cannot communicate, he is not mobile, and the level of care he requires physically is much more profound. Her son’s care has a primary emphasis on meeting his physical needs; our son’s care focuses heavily on his mental and emotional health.

There are other survivors that I know that drive, can be left alone, and require less-involved care, but not less involved concern.

Each injury impacts the family differently making brain injury both complex and interesting. Every recovery unfolds in a unique way, a way that requires focus and attention.

As my evening with the Aim High Group began, I observed a room full of people eager to listen. They watched the brief video that tells the first year of our story, and they were captivated. For me, this session was more about their story than mine. I wanted them to walk away with strategies that they could remember and that would provide them some courage and wisdom for the coming days, weeks and months ahead.

Our session was an hour, and I had a few hours worth of sharing inside. I needed to be certain about what was most important to convey. I moved through my tips and points, and suddenly we were at the end of our time. There had already been several tears shed, and I could see the emotional pain that many of these people withheld. It is freeing to talk about the things that we can’t share everywhere. Love, acceptance, and strength blossomed in the room but so did acknowledgment. Ownership of excruciating feelings was taking place.

As I came to my final point, I wanted them to soak it in. I asked everyone to take a deep breath and focus on five words. These words were not for their survivor, not for their caregiver, but for themselves. They are the words that my own heart had been longing to hear. I explained that for one minute we were going to sit and say these simple and powerful words: “I am proud of you.”

Tears fell, and I knew they were embracing the phrase and the knowledge that surviving and caregiving are tough gigs. Day after day, each can feel brutal. I wanted them to know that even if a room full of people never stood up and gave them a standing ovation, they deserved one. I wanted them to believe beyond the shadow of any doubt that they mattered. I wanted them to feel less alone, and more supported.

After the meeting, I had a chance to connect with a few of the folks in attendance. The wife of a survivor in her seventies held me tight and told me what a wonderful person she thought I was. Her husband stood by with tears in his eyes, and then struggled (due to aphasia) to say, “My wife had a stroke too.” He was capturing the notion that what happened to him, happened to both of them. From the outside, they looked so polished and lovely, but on the inside, they had been crushed.

Then a father came to me and asked, “How can I help others understand how much we need them? How much my daughter needs them?” They are not yet a year into their journey, and people are drifting away. I offered advice, but also the certainty that the pulling back of others was not about their daughter or them, but rather a lack of understanding about what all of this encompasses. He told me it was his job to protect his girl, and I felt the ache inside of his bones.

The moments of vulnerability and openness continued. Within each encounter was a powerful truth. These were brave, extraordinary people doing unbelievably difficult things. I was proud of them. And they were proud of themselves. I hope after reading this, you can whisper the following words to your own heart because you certainly deserve to hear them.

Dear caregiver and survivor,
I am proud of you.

Comments (2)

I wish there were more talks like this around the country. I have told my son how proud I am of him but, as expected when coming from his mother, it feels like something he thinks I say because I should and not because I really mean it. I wish all the things I have said and still want to say came from someone who he feels is not obligated to say it. Someone who has no vested interest in him as a person. Someone who knows the struggle he is going through on a daily basis and can fully identify with him so that he no longer feels like an island.

I am at a loss as to how to positively boost his morale and spirit at the same time as not 'minimising' the difficulties he experiences.

People have said to me 'He looks fine' 'Apart from his speech you cant tell he has a brain injury' 'He can do anything he wants, he shouldn't use his brain injury as an excuse' 'It was a long time ago, he needs to get on with his life' and other such comments'. People fall away quite quickly through lack of understanding and patience. Many people (including some of my own family) withdrew their friendship from me very early on leaving me with no emotional support. I think the thing that most carers want is for others to care about your loved one and offer them practical and emotional support too. You want your loved one to feel loved by others and it hurts that they don't seem to care.

I feel sure that just one meeting like this would make such a difference to him and encourage him to touch base with others in a similar situation. He sees himself as not being worthy of any concern on the one hand, at the same time as feeling dreadfully let down by people on the other. His brain injury has left him rather non-compliant, outspoken and sometimes very challenging and for these reasons he is very isolated in terms of having individual friendships with anyone who might be able to fully identify with his needs.

Shelley, I am so sorry for the pains both you and your son have experienced. Brain injury is beyond complicated and is intricate in the layers involved, from navigating new relationships to understanding the former ones. I think there is hope, and I don't want that to sound trite. The first place I would look is your state brain injury association. I know many survivors find comfort in support groups, etc. The other suggestion would be to see if you could get the input of a neuropsychologist. (We check in from time to time with ours and we are currently having regular sessions). Insurance steps in when it exceeds what they are willing to do, but a good doctor really does seem to help. One true friend can change everything. I am hoping with you that someone compassionate, understanding and accepting will cross paths with your son. Until then, please know that you both are more than enough and so worthy of GOOD, good things. With love, Nicole